STOP taking Enbrel

** Originally posted by mdominic **

I am a 39 year old male and I took Enbrel for two years for moderate P. I stopped taking it last November (2008). I stopped just because I was tired of injecting myself.

A few weeks ago the skin on my right leg went numb. Like pins and needles. Shortly after my left hand became week.

My GP sent me immediately to the ER and a waiting neurologist. They gave me a barrage of tests (CT, 2 MRIs, a Spinal Tap). The results showed a plaque on my cervical spine. The doctor told me that there is evidence that Enbrel can cause demyelination. Demyelination is the when the immune system attacks the nervous system. This can be MS. I believe that this problem was caused by the Enbrel. To relieve the symptoms they gave me prednisone by iv for five days. That made me so incredibly ill I thought I might die from it. The only good that came from it was that it cleared 99% of my P temporarily.

I am not a doctor, but I urge anyone taking Embrel to consider the consequences. It clearer skin worth other health issues? Please be wary and weigh all your options.

Please look at the link and the experiences of others like me. They got better after they stopped taking it. I got sick after.

http://www.drugs.com/sfx/enbrel-side-effects.html#system_12064

Report post

163 replies. Join the discussion

** Originally posted by theskinyouarein **

I am so sorry to hear about this. I hope that you are feeling better. My understanding is that many of the complications from Enbrel are thought to be dose related. What kind of dose were you on? I am hopeful for better options in the future...

Report post

** Originally posted by martiniandme **

I started Enbrel in June 2004. I went to a quarter size spot from being about 40% covered. I loved it!!! I never wanted to go off.

This Jan (2009) I started to have vision problems with my right eye. Like I looked into the sun and went into the house, but only the right eye. I went to eye doctors and regular doctors because I was getting headaches like a bat broke my nose and hit my right side of the face. They said it could be stress, but classified the headaches as cluster headaches. I was on meds for headaches, but no relief from the eye problem. Went to a neuro-opthomoligist and he seen swelling of the nerve of the eye. Now its May 2009. Through his questions a few connections were made:

+Also had vision problem after shower: MS has something called Uthoph's Phonomenon were the ms symptoms come out in showers, humidity, sauna....
+tired: took a nap in my car for 30 min of my 45min lunch. Slept 12 hrs a night and still tired by 10:00am
+pins and needles in my right hand, fingers, or arm every night
+dropped things every morning for a few hours.
+Two years ago I got double vision that disappeared after 3wks
+Taking 50mg of Enbrel a week may cause these symptoms, but doc not sure about this drug.

Had a brain and eye MRI. Two spots found. He belived it was MS and sent me to a doc that was just a neuro.

I went home and looked at the Enbrel Box and yes new onset of MS is a side effect along with optic nervitis. Stopped Enbrel that day.

3 wks after I stopped Enbrel all symptoms listed above disappeared!!! Felt like myself again.

Had a back MRI, neck MRI, and blood work that came back fine. This neuro Doc says I am a special case and wants to wait to do another MRI of the brain in Dec. He does not want me back on Enbrel. The Doc called it a "dangerous drug". Said there are no studies on people that got MS from these kind of drugs so we don't know how it has effected me.

I know all of this is related to the drug. Glad I got a wake up call and got off. Hopefully it is just a warning :)

I used to joke that I am the Enbrel spokes person. Well I am still... to warn people.

Three months off Enbrel now and breaking out w/P again. No MS symptoms came back.

Using creams again. No luck so far.

Report post

** Originally posted by MrsCuster **

It says in on the information sheet about enbrel that these are possible side effects. I am sorry it happened to you, I take enbrel for PA and I love it, I hope I never have to stop because of a side effect.


"Possible side effects of ENBREL

Serious side effects include: serious infections including TB; nervous system problems, such as multiple sclerosis, seizures, or inflammation of the nerves of the eyes; rare reports of serious blood problems (some fatal); heart failure, including new heart failure or worsening of heart failure you already have; allergic reactions; immune reactions, including a lupus-like syndrome and lymphoma (a type of cancer). People with rheumatoid arthritis and psoriasis may have a higher chance for getting lymphoma."

Report post

** Originally posted by martiniandme **

Dear mdominic- I forgot to ask how are your symptoms now? Gone? What does your doctor say to do from here?



Dear mrscuster- I completely understand the love. I had clear skin for 5 years. 5 years and I thought I was in the clear with the side effects of Enbrel. Stupid of me, huh? My hope is that if you do experience anything weird that you don't wait to see a doctor... and another doctor if your gut tells you somethings wrong and they don't think so. Getting it early may have saved me.

I put this response up to let mdominic know that this has happened to me and he is not alone. Hence, the title "me too! Enbrel = MS??" and for us Enbrel may have equaled MS. Still a question... for us. I hope you did not take it as everyone on Enbrel will have this side effect happen to them. Not my intention.. I now know I should have addressed the posting to mdominic to make that clear.

I wish you the very best for you on Enbrel.



Dear Pre-Biologists user - I like mdominic's comment. "It clearer skin worth other health issues?" Maybe I will rephase it as, Is clear skin worth the possiblity of other health issues? Remembering that there is a risk of lympohoma, a type of cancer.

Report post

** Originally posted by matter2003 **

its ridiculous that the majority of drugs have side effects that are as bad or worse than what it is supposed to cure....

Report post

** Originally posted by szorzi **

It clearer skin worth other health issues?

Just to clarify, many of us take Enbrel or other biologicals for debilitating psoriatic arthritis. I take a double dose of Humira and have been for over 2 years. Do the possible side effects cause me concern? You bet they do! I am not stupid and I do realize that it could happen to ME. Am I willing to go back to being completely bedridden with excruciating pain in every joint? No. The life I had before Humira was, frankly, not worth living. I could not walk. I could not care for myself or my family. I lay in my bed and cried from pain, even though I was taking NSAIDs and Tramadol around the clock. That is no way to live. Without a DMARD, my situation would only have gotten worse. It is likely that permanent and irreversible damage would have been done to my joints.

So please realize that some of us are not taking these meds just to have clear skin!

Report post

** Originally posted by MARCIA70 **

i am sorry for all of your problems , it has to be rough ! i take 2 shots a week and have had absolutely no side effects since i started 7 months ago and hope i don't . however i do think it's unfair to say '' stop using enbrel '' everyone who chooses to use it knows the potential side effects and unfortunately some people get them.........i may get them eventually ( hope not ) , but it's a risk i know i'm taking . it's like smoking ( which i do too ) i know it can cause cancer , but if i get it is it the tobacco companys fault ? not hardly , i choose to do it. good luck to you !

Report post

** Originally posted by Bentcorner **

Enbrel can cause multiple sclerosis?

My derm never talked to me about this. She just told me that it can make me prone to infections. She never mentioned MS. I took my first injection on August 2 and so far, my psoriasis is only worse. I am getting so tired of this. And to think people wonder why people with psoriasis often contemplate suicide.

Report post

** Originally posted by oscarinfw **

I took Enbrel for only a few weeks. A Staph infection landed me in the hospital for a week. Later on, I had my first visit with a rheumatologist "just in case". He ordered up a Lupus profile which revealed bloodcounts highly suggestive of lupus. He strongly recommended I stop the Enbrel and I did. Two months later, the "lupus-suggestive" bloodcounts had returned to normal.

A few months later, facial lesions appeared which were thought to be "lupus-inspired". The derm was unsure what to do because a skin biopsy was not conclusive for lupus. She put me on Imuran anyway to try to control the facial lesions. It worked beautifully not only on the face but on the (presumed?) psoriasis rashes covering other parts of the body. A second opinion from another derm agreed with the lupus diagnosis. The rheumatologist has more recently agreed with the derms on the lupus (and psoriasis) diagnosis because of more recent worrying bloodcounts.

It does make me wonder if the Enbrel did indeed induce(/accelerate development of ?) lupus. OTOH, my PCP has for years worried about lupus because of consistently elevated ANA (reason for the rheumy visit in the first place).

Report post

** Originally posted by odin7 **

it's like smoking ( which i do too ) i know it can cause cancer , but if i get it is it the tobacco companys fault ? not hardly , i choose to do it. good luck to you !

Any corporation (and its enablers) that markets a "Devil's Bargain" is responsible, especially if the "terms" of the consequences are not fully disclosed or even downplayed. This could be from the addicting doses of nicotine along with the tars leading (for some) to lung disease and cancer or the addicting promise of clear skin along with the immunosuppression leading (for some) to opportunistic infections, neurological disease, and cancer. (I love analogies - thanks for providing one.) -O7

Report post

** Originally posted by wildflowerAnn **

Has anyone heard from HarlowsMom? She used Enbrel for only 2 years and was diagnosed with cancer in May. She posted that she had an appointment with an oncologist in June, and never posted again. Hope she's okay.

Sorry to read that Enbrel caused MS. Hope both of you recover. Thanks for the heads up.

(Expect incoming fighter planes soon. :) )

Report post

** Originally posted by SandraNP **

Hi all. My personal experience with enbrel after taking it for four months, I was diagnosed with optic neuritis and had four demyelinating lesions seen on brain MRI consistent with ms. Needless to say, I went off enbrel. One of the rare but serious side effects
Sandra

Report post

** Originally posted by MrsCuster **

Dear mdominic- I forgot to ask how are your symptoms now? Gone? What does your doctor say to do from here?



Dear mrscuster- I completely understand the love. I had clear skin for 5 years. 5 years and I thought I was in the clear with the side effects of Enbrel. Stupid of me, huh? My hope is that if you do experience anything weird that you don't wait to see a doctor... and another doctor if your gut tells you somethings wrong and they don't think so. Getting it early may have saved me.

I put this response up to let mdominic know that this has happened to me and he is not alone. Hence, the title "me too! Enbrel = MS??" and for us Enbrel may have equaled MS. Still a question... for us. I hope you did not take it as everyone on Enbrel will have this side effect happen to them. Not my intention.. I now know I should have addressed the posting to mdominic to make that clear.

I wish you the very best for you on Enbrel.



Dear Pre-Biologists user - I like mdominic's comment. "It clearer skin worth other health issues?" Maybe I will rephase it as, Is clear skin worth the possiblity of other health issues? Remembering that there is a risk of lympohoma, a type of cancer.

Yea I know that not everyone gets these side effects, I read the information on Enbrel before I started taking it, I have no problem with this thread or the posts on it. It is a good thing to let people know it DOES happen. But like Szorzi stated not all of us take it for the reason of skin problems, if I just had the psoriasis and not the Psoriatic arthritis I wouldnt even take it because my P aint that bad. But the PA is crippleing like Z said, I am 21 and literally couldnt get out of bed before Enbrel.

Report post

** Originally posted by nla **

Not sure if I am a "fighter plane" or not but let me drop this bomb anyway :) I have also been on Enbrel for over 5 years for severe arthritis. Because of all the potential side effects and possibilities it was a very difficult decision to make. Even after all this time I still realize it is a drug with very serious consequences. For me, though, it does make the difference of functioning vs. not. My heart goes out to anyone who runs into difficulties with this or any other drug.

Bentcorner, I am surprised your doctor did not give you more information before you chose Enbrel. I do, however, firmly believe that part of the treatment decision making process requires us all to be proactive and research before making any decisions about treatment. There is a ton of information available at Enliven Service's website as well as full literature about the drug in each prescription box. Not to mention the commercials on television. One night one of the women I work with was at home watching television with her husband when an Enbrel commercial came on. After hearing the commercial her husband turned to her and said "Who in their right mind would ever take THAT stuff?" She simply replied "That's what Nancy takes." He suddenly realized just how serious PA can be.

I sincerely wish everybody dealing with any of this the best possible outcome. As I always maintain "There but for the grace of God go I".

Nancy

Report post

** Originally posted by phoenixrising **

I'll keep taking Enbrel. There is a small risk of a life-altering or life-ending complication.

I suffered with very severe P for the last 18 years and finally decided to try Enbrel four months ago. For me, without effective treatment (biologic or otherwise) there is a 100% risk of a life-altering, and potentially life-threatening disease.

If someone has declined a biologic due to their own reasoning and/or fear, or complications, so be it (and I feel for you if you've suffered complications), but your reasoning and fear or complications apply to your life, not mine. I think each person ought to confine their choices to their own life.

Report post

** Originally posted by Bentcorner **

Bentcorner, I am surprised your doctor did not give you more information before you chose Enbrel. I do, however, firmly believe that part of the treatment decision making process requires us all to be proactive and research before making any decisions about treatment.

She never mentioned MS or anything to do with my central nervous system. She mentioned being prone to infections and a higher risk of lymphoma. MS, if she had said anything about it, would have been a non-starter for me.

I didn't choose Enbrel, she did. I'm not a doctor. It's not like I saw a commercial for it on the teevee and ran to my doctor asking for a script. I went to her because my primary care doctor referred me to her. After looking at my hands, she put me first on Humira and then, Enbrel.

I get what you're saying about being proactive, but I never even took high school chemistry. There's things I know about and there's things I don't. I guess I could have done more research online, but if I believed everything on the Internets, I would believe my president was born in Kenya and 911 was an inside job.

Report post

** Originally posted by phoenixrising **

Assigning cause is not straightforward. If you have one autoimmune disease, you are more likely to have another one. The following data are from 1989, prior to Enbrel and biologics.

: Wiad Lek. 1989 May 1;42(9):575-8.Links
[Multiple sclerosis and psoriasis]
[Article in Polish]

Cendrowski W.

Among 51 patients with clinically probable multiple sclerosis three had typical chronic psoriasis. The incidence of psoriasis in the studies group of multiple sclerosis patients was higher (one case per 17 patients) than in the general population (one per 33 subjects). In all three cases psoriasis developed before the beginning of remitting multiple sclerosis and showed no correlation with the exacerbations of the neurological disease or with the degree of neurological function loss. The presence of histocompatibility antigens (HLA), immunopathological and biochemical changes in both diseases is discussed.

PMID: 2629326 [PubMed - indexed for MEDLINE]

In every box of Enbrel that I've ever opened is paperwork. If you look under "Neurologic Events" it says:
Treatment with Enbrel and other agents that inhibit TNF have been associated with rare cases of new onset or exacerbation of central nervous system demyelinating disorders, some presenting with mental status changes and some associated with permanent disability. Cases of transverse myelitis, optic neuritis, multiple sclerosis, and new onset or exacerbation of seizure disorders have been observed in association with Enbrel therapy. The causal relationship to Enbrel threapy remains unclear.

Scientifically assigning causality requires more rigor than simply looking for correlations. Correlation is not evidence of causation.

Report post

** Originally posted by Bentcorner **

What I don't understand is that you picked up a syringe of biological medication and injected it without first reading the drug insert. MS is clearly stated as a side effect in patients on Enbrel.

My rheumy and I go back and forth with treatment plans. He knows that I research everything he suggests and I accept or deny the treatment according to what I find and what I'm comfortable with. He now writes a script, tells me to do my research and decide what I want to do.

It's called informed judgment.

I didn't "pick up a syringe" and inject myself. I took the pre-loaded SureClick autoinjectors that she gave me and did what she told me to do. I'm not the board certified dermatologist, she is. I wouldn't even pretend to know as much about Enbrel or any other biologic that she knows, no matter how many websites I read.

My "informed judgment" involved talking to my dermatologist and doing what she recommended. It's not like I was injecting myself with something I bought off of eBay.

Report post

** Originally posted by szorzi **

Scientifically assigning causality requires more rigor than simply looking for correlations. Correlation is not evidence of causation.

Amen! Just because 2 things occur together does not necessarily mean that one causes the other. Association (correlation) is not the same as causation.

P is also highly correlated with diabetes. A much higher correlation, by the way, than MS with biologicals. That does not mean P causes diabetes or that diabetes causes P. It's more likely that some common process is contributing to both. Or that a similar genetic defect (same gene or a nearby one) is contributing to both. Or even possibly that the same environmental factor is contributing to both.

Report post

** Originally posted by ginnylee **

I'm not on Enbrel, but I am on Remicade. If you search my posts, you will see that it was an agonizing decision for me. I didn't want to do it at all. I'm 37 and have three kids, plus my father died with leukemia when I was 7 months old. So, needless to say I was horrified.

My psoriasis is extremely minor. I could ignore it if I wanted to. It's just a small patch on the top of my foot.

But, I have Psoriatic Arthritis. By mid-July of this year, I couldn't stand up straight. I was stuck at a 45 degree angle. Instead of walking, I painfully shuffled. I was going out of my mind in pain. I couldn't leave my house. My husband did the best he could to pick up the slack and provide the children with a semi-normal life.

I've had it for two years. In those two years I've tried NSAIDs, MTX and Plaquenil. Nothing helped. The Plaquenil gave me enough energy for a while to sort of cope. Eventually it wasn't enough.

Once I had been through about three days of laying on my couch in tears, I made an emergency appointment with my rheum. He had asked me to consider Remicade during my last visit in June. The staff was so kind and worked me in the very day I called. The receptionist could hear the pain across the phone when I called. My rheum walked in the exam room and the first thing he said was, "You can't play around with this anymore. We've got to do something to help you." He spent the next twenty or so minutes answering all of my questions. Then, he sent in the infusion nurse and she answered even more questions. They had loaded me up with brochures and documents the visit before. I made the appointment for that very week for my first infusion.

I was fully aware of all of the risks of Remicade before I sat down in the infusion chair. It still scares me. But, the only hope I have of walking right now is Remicade. I pray that we'll soon have safer options. Better yet - a cure. Unfortunately, that's not an option right now, so I have to take what I can get.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support the National Psoriasis Foundation

Help the National Psoriasis Foundation reach its goals and support people like yourself by making a donation today.

Donate to the National Psoriasis Foundation

Discussion topics

Additional resources

Community leaders